At the Continua Health Alliance summit in Boston this week, most of the speakers are talking enthusiastically about the amount of Government momentum for reform of the healthcare system. Keynote speakers from all areas of the medical industry are telling us how things will change.

It’s not a new message, albeit it has been revitalised by the prospect of the Obama billions. The physicians believe that they can heal themselves, or at least the system they work in. So it came as a breath of fresh air to see a posting that popped into my inbox from Joe Macaluso on Real Health Reform. It argues that the only way we will see any real reform is if it’s done by patients, without the support of Congress or the medical industry.

Over in Europe, the EU is running a debate on Consumers and Health, asking for contributions to a seminar in Brussels at the end of the month. I’d been thinking about this for some time and had come to the conclusion that the most useful thing that the EU commission could do would be to look at how to change the regulatory playing field. That’s necessary to let patient-based groups start to take healthcare and even prescribing into their own hands. To achieve that I think we need a Manifesto for Consumer Health, that provides a safe environment for disruptive developments. By coincidence I’d just finished writing my thoughts on that, which I was posting to the EU Consumers and Health site as Joe’s mail came in. After reading Joe’s post, I’ve added a poll asking “Whether you believe that healthcare reform needs to be driven by patients, rather than medics or legislators?” Please go and vote – I’ll post the result in a later blog.

So why do I think we need a manifesto..?

Over the last decade we have heard proposal after proposal to “solve” the demographic problems that increasingly challenge our health systems. Billions of dollars and Euros have been poured into research that only ever appears to act as a basis for yet another research project. As a result, rather than containing the cost of healthcare and improving patient expectations, the health industry continues to roll along largely unchanged. Everyone continues to point out that the health system we have is broken. But it is happy to remain so, as long as it makes money for all involved.

A major reason for that is that governments persist in asking the health industry to reform itself. They persist in believing in the old maxim of “physician heal thyself”. All of the evidence is that whilst they are making a comfortable living, they have little incentive for fundamental change. Instead their comprehensive hold on the health system serves as a barrier to stifle the more disruptive patient led initiatives.

If we are to take cost out of healthcare, there is a fundamental corollary – we need to take expensive medical staff out of our future health system. eHealth or Telecare solutions will not offer savings if we still need the same number of health professionals to deliver our healthcare. Instead we need to look at ways in which patients can self-manage their health, using the medical profession only when they need major medical intervention.

That is why I believe we need a Manifesto for Consumer Healthcare and Wellness. Today the system and regulatory procedures throughout European member states work against patient groups developing their own care structures. Instead they support the maintenance of the status quo. We are about to see the emergence of a new generation of low cost, connected medical monitors, such as weighing scales, blood pressure meters, blood glucose meters and pulse oximeters. These will let patients measure their own health trends, often using the convenience of their mobile phones to transmit data, and save them to their own personal health records. It opens up the ability for patients to begin to measure their own wellness and trends.

If we are to persuade our citizens to embrace these developments and begin to use them for society’s mutual benefit, they need to have compelling reasons to do so. All of the evidence suggests that this will not come from medical companies or state health systems – they are too set in their ways. Rather, we need to encourage new, disruptive approaches that address their own quality of life. Already we are seeing the growth of special interest groups of patients who share information on their diseases. That’s eminently sensible, as they have the hour by hour experience of living with their chronic conditions. They know what influences their daily life and how best to manage it. This is where change and compelling applications are likely to come from.

As low cost diagnostic monitors become available, the next step is for these groups to work out how to share their data, and the way they manage their disease, working towards medication or lifestyle regimes that give them the best possible quality of life. From that, the obvious progression is to give them access to prescribe their own medication, independently of the current gatekeepers.

This will be resisted by the current medical hierarchy. Whilst there are valid arguments for continued regulation to preventing damage and charlatanism, they need to be modified to encourage innovation. As vested interests will attempt to deny this progress, we need an EU wide approach to enable a disruptive approach by providing a framework that removes barriers at the same time as trying to include appropriate patient safeguards.

To enable innovation to happen as quickly as possible, it is important to provide a environment that is conducive for development. That needs guidelines and possible support to let patient based groups pursue models which the established medical establishment may see as disruptive or threatening. For that reason I propose that the EU implements a Manifesto to enable an atmosphere which allows patients to build these new structures.

There are other benefits from this approach. The development of these groups and self regulated measurement of patient conditions provide a unique opportunity to build a database of evidence for different treatment plans. Encouraging open source development of such databases could provide a more valuable source of evidence based treatment than anything that has come from previous medical trials. It may even be able to use this to feed back into the conventional medical system.

Manifesto for Consumer Health and Wellness

The EU should work to provide an environment to stimulate the development of patient centric healthcare initiatives. This concentrates on removing restrictive barriers and providing a framework for a radically new approach for healthcare development, led by patients. It should help to protect such groups from regulatory discrimination, encourage innovation, communication and dissemination of information and provide access to sources of appropriate medication.

Key points are:

Encourage patient based development

Remove regulatory barriers to group self-treatment

Review prescribing barriers, allowing groups to work directly with pharmaceutical suppliers. This may need to be limited to a defined list of generics, and be dependent on the open availability of anonymised patient data.

Encourage and share best practice in the development of “trust” strategies for patient groups

Provide a directory of innovation and promote the most compelling applications.

Provide a forum for dissemination of data

Optionally provide an EU personal health data storage facility, based on open source standards, for use by patient groups.

Extend wellness and personal health from the personal group to occupational health, without the need for traditional medical involvement.

That’s just a starting point. It’s a debate that we need to start now, so that those who start to develop new applications can concentrate in innovation and not fighting regulation. If you’ve any other suggestions, please let me know.

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5 comments ↓

I found this post very interesting, and completely agree with what you have said.

I think changing the mind set for the treatment of conditions to a more self managed approach is essential.

Through self management and allowing patients see cause and affect of their management of their condition, I believe it will allow patients to better understand and make more informed choices.

I’m just starting to look more into this industry and there are groups out there such as the Continua Health Alliance which are fantastic, but seem unobtainable for smaller companies to get involved with.

Are there any groups out there that allow smaller companies/organisation to talk and collaborate on innovative telemedicare solutions?

At the moment the running is being made by the large organisations, such as Continua, which are essentially big organisations for big companies. I’m not sure that is likely to change in the short term.

There is a strong possibility that it may even get worse. The reason for that is the sheer scale of money which is being offered by the US and other governments. That plays to organisations who can pour funds into lobbying, which further promotes the messages of the large players at the expense of the smaller, more innovative voices.

If anyone is aware of smaller groups, then please post the information here and I’ll try and evangelise them.

I can appreciate the situation and someone needs to lead and of course it’s going to be the people with the money and power.

Sounds like (if there isn’t one already) we could do with an organisation that works with the smaller companies to give them a platform for innovation and collaboration. Once we have that it could be brought to the table as one voice to organisation such as Continua.

[…] of medical devices can be exempted to allow users to innovate. I’ve suggested that Consumer Healthcare needs its own Manifesto to free it from the embrace of unnecessary regulation. After today, that seems even more […]

[…] of regulation. I’ve already argued that if consumer healthcare is to flourish we need a new patient manifesto that does exactly the opposite. There are positive things happening – groups like the Continua […]

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About Creative Connectivity

Creative Connectivity is Nick Hunn's blog on aspects and applications of wireless connectivity. Having worked with wireless for over twenty years I've seen the best and worst of it and despair at how little of its potential is exploited.

I hope that's about to change, as the demands of healthcare, energy and transport apply pressure to use wireless more intelligently for consumer health devices, smart metering and telematics. These are my views on the subject - please let me know yours.

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